A NICE DILEMMA?

Margaret Williams 15th December 2008

"ME/CFS in the US

In the Summer 2008 issue of The CFIDS Chronicle published by The CFIDS Association of America, Anthony Komaroff, Professor of Medicine at Harvard, editor-in-chief of Harvard Health Publications and senior physician at Brigham and Womens’ Hospital, Boston (who has published more than 230 research papers on ME/CFS) wrote an article listing the top ten biomedical research findings in ME/CFS.

These are summarised at http://www.prohealth.com/library/showarticle.cfm?libid=14063 and include evidence that:

(1) many patients with ME/CFS have no diagnosable psychiatric disorder and that ME/CFS is not a form of depression;

(2) there is a state of chronic, low-grade immune activation, with evidence of activated T cells and evidence of genes reflecting immune activation, as well as evidence of increased levels of cytokines;

(3) there is substantial evidence of poorly-functioning NK cells (white blood cells that are important in fighting viral infections);

(4) there is evidence of white and grey matter abnormalities in the brain;

(5) there is evidence of abnormalities in brain metabolism (and evidence of dysfunction of energy metabolism in the mitochondria);

(6) there is evidence of abnormalities in the neuroendocrine system, particularly in the HPA axis but also in the hypothalamic-prolactin axis and in the hypothalamic-growth hormone axis;

(7) there is evidence of cognitive difficulties, especially with information processing, memory and/or attention;

(8) there is evidence of abnormalities in the autonomic nervous system (including a failure to maintain blood pressure, abnormal responses of the heart rate, and unusual pooling of blood in the legs, as well as low levels of blood volume);

(9) there is evidence of disordered gene expression, especially in those genes that are important in energy metabolism and in genes connected to HPA axis activity, to the sympathetic nervous system and to the immune system;

(10) there is evidence of frequent infection with viruses, especially herpesvirus and enteroviruses."


"CBT/GET does not prevent death from ME/CFS:

There have been a number of high profile deaths from ME/CFS in the UK. There can be few in the international ME community who have forgotten the harrowing death three years ago of 32 year old Sophia Mirza, who was forcibly but illegally detained under the Mental Health Act and who subsequently died from ME/CFS and whose autopsy revealed severe inflammation of the dorsal roots in her spinal cord. These are the sensory nerve roots, so she must have been in considerable pain for many years."


"If CBT is so successful, where, then, was the involvement of the Wessely School psychiatrists, especially Professors Simon Wessely and Peter White, and even Professor Bass himself, in these tragic cases? Peter White is on record as affirming that CBT/GET can cure “CFS/ME” (“Is full recovery possible after CBT for CFS?”; Hans Knoop, Peter White et al; Psychotherapy & Psychosomatics 2007:76:171-176).

Professor Michael Sharpe is also on record as asserting: “There is evidence that psychiatric treatment can reduce disability in CFS. In some cases, it can be curative” (“Psychiatric Management of Post Viral Fatigue Syndrome”; Michael Sharpe; British Medical Bulletin 1991:47:4:989-1005) and Simon Wessely himself is also on record as confirming that significantly more patients met the criteria for full recovery and that: “seven (23%) of the CBT patients were deemed completely recovered” (“Long-term outcome of cognitive behavioural therapy versus relaxation therapy for chronic fatigue syndrome: a five-year follow up study”; Deale A, Chalder T, Wessely S et al; Am J Psychiat 2001:158:2038-2042).

For the record, that same year (2001) Wessely is also on record as stating that CBT is not “remotely curative” (Editorial; JAMA 19th September 2001:286:11). Wessely does not clarify how the same intervention can result in complete recovery even though it is not remotely curative.

None of these trials, of course, included anyone who was severely affected by ME/CFS; indeed, it is entirely possible that there was not a single patient with ME/CFS in any of those studies, since most of the trials used the Oxford criteria and those criteria expressly exclude people with neurological disorders but do specifically include those with psychiatric disorders (which often have “fatigue” as a problematic symptom)............."

My addition: Oh and what do the brilliant people from Nijmegen say: they cure 70% of so called people with CFS or ME as they say that CFS and ME are the same ............

Yes, CBT is just magical, if only they would do a trial for once with ME patients so we could bin CBT once and for all .......